It’s Always Something

It’s been a while since I’ve written a post, but that doesn’t mean nothing’s been happening. It always seems like we have some new fire to put out or some new obstacle in E’s path to tackle or overcome. The past few months we’ve dealt with both health issues and insurance issues. I mentioned to my husband that just when I think we’re in the clear something new pops up and he likened it to the old Bugs Bunny cartoons when the characters beat each other up – one arm goes down in the fight, but then a leg flies into the air and nothing is ever still. A silly comparison, but a very appropriate one at the same time.

In November, E had some drastically low neutrophil (white blood cell) counts that if left untreated, could have put her in the hospital. (As most of you know, white blood cells fight infections.) Since E is immunosuppressed, she really needs her neutrophils to work at top-level. Her team of nephrologists decided to prescribe daily labs and injections until E’s level came back up to a safe number. E also had another round of low hemoglobin at the same time (anemia is a chronic battle for her thanks to her kidney disease), so she had to receive injections to boost her hemoglobin production then too. So for two weeks in November we took her to her infusion center every day to receive injections in her thighs. None of us know what caused her neutrophil level to plummet, but we breathed sighs of relief when all of her levels rebounded in December. We thought that was the end of this latest new hurdle to clear.

In February, E had her usual 6-month check-up at her transplant clinic. While there, her doctor asked me if I’d start taking E’s blood pressures again at home, because her BP at the clinic was a little high, and her latest lab results indicated that her cholesterol was high. She said that she wanted to keep a closer eye on E’s BPs given her cardiac history (extremely high blood pressures thanks to kidney disease), and that we needed to implement a low-sodium diet for E. In August we had to implement a high-phosphorus diet for E to boost her phosphorus level. So, I was a little worried that things were starting to spiral out of control for us. My husband assured me that E’s high BP was probably just an anomaly since she was excited to be at the clinic, and that taking BPs regularly at home wouldn’t be a big deal. Sure enough, within two weeks her doctor was satisfied that her BPs at home were just fine. We now take her BP once a week and send a log of her pressures to our transplant nurse coordinator every month. As for the diet change, we introduced lower-sodium products to E’s diet and hope that these changes combined with the whole-grain foods she already eats to increase her phosphorus will contribute better lab numbers.

In March, E had yet another round of weird lab numbers – this time labs showed low platelets again. E’s kidney disease (autosomal recessive polycystic kidney disease, or ARPKD) also causes problems with her liver, so her liver labs are closely monitored. Because E had months of consistently low platelets, after the March labs, her hepatologist wanted her to go in for an out-of-cycle ultrasound of her liver and spleen to see if either of these organs were having new problems and causing the low platelet numbers. E’s transplant nurse coordinator reassured us that this ultrasound wasn’t something to worry about, but when a doctor orders unscheduled tests, we tend to worry a bit. So, I took E in for a detailed ultrasound of her liver and spleen at her transplant hospital and then went to see her hepatologist for follow-up the week after. The ultrasound revealed that E’s liver is doing ok although it is fibrotic (which we knew), and that her spleen has grown a bit more from last year. Her hepatologist told me that this ultrasound had good results. It didn’t show anything overly concerning to her and would be a good baseline for her to keep a closer eye on both the liver and spleen. And because both organs looked unchanged except for the growth of the spleen, it indicated to her that the cause of E’s low platelet numbers is probably one of her anti-rejection medications. So, she recommended a medication change to address the low platelet numbers. If that doesn’t help, then E will go in for an endoscopy to see if she has any varices that might be causing the low platelet numbers. Varices are enlarged or swollen veins. They are new to us, but are a common symptom of ARPKD and can be very volatile and scary. We are really hoping that the medication is indeed the culprit of the low platelets. E will go in for another detailed ultrasound of her liver and spleen in six months to see how both organs are doing.

March did bring us some good news in the ophthalmology department. E has a few problems with her eyesight due to being a preemie and she sees an ophthalmologist every six months too. This time at her check-up, we heard that her eyes are actually getting stronger from the patching we’ve been doing. Her doctor said that if we patch her left eye a couple hours every day for the next six months, it is possible she might not need her glasses anymore. That was good news for sure!

Now it’s April and we’ve come back full circle to issues we dealt with in November. E’s nephrology team decided to address some of her low lab numbers by changing the dose of one of her anti-rejection meds. The plan is to see if her lab numbers improve with this change. If they don’t, then we’ll switch one of her meds per the hepatologist’s recommendation and see if that new med fixes the lab numbers. Thankfully, this change went off without a hitch from the pharmacy. It just took some time for the team to decide what they wanted to do for sure. But unfortunately, we received word from our primary health insurance company that all the extra injections E received in November to boost her neutrophils and hemoglobin would not be covered because they were not deemed “medically necessary” according to the insurance company’s criteria. What is super frustrating about this is that we filed an appeal of the insurance company’s refusal to authorize these injections in November and thought we’d submitted all the information the company needed. Now, six months later(!), we are receiving a whole new round of denials. It takes me, E’s transplant nurse coordinator, and a financial coordinator from the transplant center to file all the paperwork needed to appeal one of these adverse decisions from the insurance company. We thought we’d successfully appealed one denial of the injections only to receive notice of a new denial two weeks later. When I called the insurance company about the latest denial, the representative told me that the insurance company didn’t have enough information from us from the November appeal in order to move the process along for us. If I wouldn’t have called, we would never have known what the problem was – neither we nor E’s doctor had ever gotten follow-up correspondence from the insurance company stating that more information was needed. So I’ve spent considerable time once again this month on the phone with insurance and corresponding with E’s transplant office to assemble all the records we need to satisfy the insurance company’s need for information about E’s health.

My best advice for anyone dealing with an insurance company is to never be afraid to call Member Services. Always take detailed notes, ask for the name of the representative working with you, and never be afraid to ask questions or ask for a supervisor. You are entitled to know what’s going on with your health plan. And don’t be afraid to ask for help if you don’t know how to find the information you need from your health insurance. In the past, if I’ve needed help navigating insurance, I’ve asked for help from one of our social workers. They’ve always been very helpful. If you don’t have a social worker assigned to you already, ask your hospital or clinic if there is a social worker on staff who could assist you. No one deserves to be in the dark about hospital bills! We are hopeful that between all of us working on E’s case that we’ll get her insurance denials successfully resolved – even if it takes us another few months.